Author Topic: List of Doctors Who Knows about POIS and are seeing POIS patients  (Read 17358 times)

demografx

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #40 on: January 19, 2020, 09:26:11 AM »
Thanks, Muon
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

marrtintintin

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #41 on: February 05, 2020, 04:15:22 PM »
There was Dr David Goldmeier in St Mary Hospital, London that I met in 2011 and he met several POIS patients. I have just been referred to him by my GP so will have soon an appointment with him.

How did that go? I also live in london
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

marrtintintin

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #42 on: February 07, 2020, 09:50:06 AM »
Any Londoners in this forum? If so, have you got any recommendations in terms of doctors and treatments?

Thank you!
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

jeejay79

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #43 on: April 02, 2020, 10:04:22 AM »
Hiya mate,

I'm not from London but live in Dorset. I would be willing to travel the country for a POIS doc. I reckon I'll try to contact Dr Goldmeier to see if I can after this whole Covid fiasco!

Idk if you've looked into that possibility? I mean of contacting him directly.

Take care!

J
Symptoms last 4-7 days: brain fog, itchy/watery eyes, warm sensation in back, difficulty getting full breath, headache, muscle spasms, weak legs, fast heart rate, stomach pain, social isolation, anxiety. Symptoms not present out of POIS state. Currently on daily Fexofenadine and low-histamine diet

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #44 on: June 03, 2020, 07:06:34 AM »
Japan has been added:

https://poiscenter.com/forums/index.php?topic=2575.msg31463#msg31463

Another Doctor to add:

Y. Reisman MD, PhD, FECSM, ECPS                                 

Urologists & Sexologist-NVVS
Honorary Professor of Urology, Federal State Institute of Urology
Visiting Professor of Andrology, Shanghai Jiao Tong University
Program Director & Senior Lecturer Sexology RINO Amsterdam
Past-President of the European Society for Sexual Medicine (ESSM)

Address:
Prof. W.H. Keesomlaan 12
Amstelveen, The Netherlands

Phone: +0031638760984
Email address: info@flare-health.nl
Website: https://www.flare-health.nl/

Article: Clinical experience with post-orgasmic illness syndrome (POIS) patient-characteristics and possible treatment modality

Comment: He knew Dr. Waldinger personally. He would like to help POIS patients.
« Last Edit: June 03, 2020, 12:04:23 PM by Muon »

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #45 on: June 03, 2020, 09:53:08 PM »
Japan has been added:

https://poiscenter.com/forums/index.php?topic=2575.msg31463#msg31463

Another Doctor to add:

Y. Reisman MD, PhD, FECSM, ECPS                                 

Urologists & Sexologist-NVVS
Honorary Professor of Urology, Federal State Institute of Urology
Visiting Professor of Andrology, Shanghai Jiao Tong University
Program Director & Senior Lecturer Sexology RINO Amsterdam
Past-President of the European Society for Sexual Medicine (ESSM)

Address:
Prof. W.H. Keesomlaan 12
Amstelveen, The Netherlands

Phone: +0031638760984
Email address: info@flare-health.nl
Website: https://www.flare-health.nl/

Article: Clinical experience with post-orgasmic illness syndrome (POIS) patient-characteristics and possible treatment modality

Comment: He knew Dr. Waldinger personally. He would like to help POIS patients.

thanks, Muon, added at #11 on the list at the beginning of this thread: https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Iwillbeatthis

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #46 on: June 08, 2020, 01:35:55 PM »
Forget Dr Goldmeier he only wants to help people who only have POIS, he seems to think that all the people he sees only have POIS and thats it. Because I have other triggers like showers, exercise histamine foods, chronic infections which are likely because of an immune deficiency or mast cell issue he doesn't want to help me anymore... Its funny because he was the one who suggested to me that I may have a mast cell issue. I understand that he is a doctor only in sexual medicine but if he is seeing people for POIS then he shouldn't stop seeing or helping me for this reason.
And even still the treatments he was suggesting weren't in the slightest helpful... He is a nice guy but its frustrating how even the doctors who see POIS patients can be like this.

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #47 on: June 08, 2020, 02:30:42 PM »
It seems to be difficult for doctors to step out of their comfort zone and explore & address potential mast cell issues. If the random guy on the forum without any medical background can read up on mast cell disorders and how you approach treatment then MDs can do it as well. They need to educate themselves on the subject and step out of their comfort zone.

I asked Waldinger a question once, can't remember what question but it was research related and he told me he was looking for patients who had only POIS and nothing else. Then I told him that the majority might have secondary conditions next to POIS which might be intertwined with POIS. They see POIS as an isolated disease which may not be true.
« Last Edit: June 08, 2020, 02:33:04 PM by Muon »

Iwillbeatthis

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #48 on: June 08, 2020, 02:59:34 PM »
Yes I completely agree with you they need to do a lot more but their ignorance and arrogance is stopping them.

Its funny because I told him ok I don't mind lets only speak about POIS then but because I have secondary issues also he doesn't seem to want to help me anymore. He doesn't want to prescribe me indomethacin yet theres a paper where he gave it to a POIS patient.

Clues

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #49 on: June 09, 2020, 07:02:09 AM »
I asked Waldinger a question once, can't remember what question but it was research related and he told me he was looking for patients who had only POIS and nothing else. Then I told him that the majority might have secondary conditions next to POIS which might be intertwined with POIS. They see POIS as an isolated disease which may not be true.

That sounds like a total dead end, and I'm disappointed to hear a researcher would have that attitude towards something that's clearly a multi-system disorder. I'm sure isolating it would have made it easier to research, but I've yet to hear of a single POIS sufferer who doesn't have a bunch of other symptoms as well.

happy2

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #50 on: August 15, 2020, 09:47:08 PM »
Another doctor's name.....Dr. Jay D. Burstein (Urologist) Sycamore, llinois.  Northwestern medicine and Kish Health Systems affiliated.  Knows this condition.
« Last Edit: August 15, 2020, 10:03:54 PM by happy2 »

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #51 on: August 23, 2020, 09:21:38 PM »
Important note:

*** To see the current, updated list of POIS Doctors, go at the beginning of this thread at:
https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
Thank you.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #52 on: October 13, 2020, 09:35:53 AM »
A list of physicians for those individuals with Dysautonomia: https://www.dinet.org/physicians/

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #53 on: October 21, 2020, 07:37:57 AM »
I got permission from Dr. Rubin to add her to the list.

"I’d be thrilled to be on the list! We have a lot of work to do to research this awful condition!"

Rachel S. Rubin MD, IF
Board Certified Urologist and Sexual Medicine Specialist
IntimMedicine Specialists
Assistant Clinical Professor Department of Urology, Georgetown University

1850 M Street Suite 450
Washington DC 20036
office: 202-293-1000 / fax: 202-463-6150

Website: www.IntimMedicine.com
email: rrubin@intimMedicine.com
twitter: @rachelsrubin1
Instagram: @drrachelrubin
Facebook: DrRachelRubin

Another doctor's name.....Dr. Jay D. Burstein (Urologist) Sycamore, llinois.  Northwestern medicine and Kish Health Systems affiliated.  Knows this condition.

Did someone check up on this doctor whether we can add the name to the list?

Clues

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #54 on: October 21, 2020, 08:00:08 AM »
"I'd be thrilled to be on the list! We have a lot of work to do to research this awful condition!"

Wow, wish I could meet a doc with that attitude. :o Failing miserably at finding an empathetic doctor willing to investigate properly here in Norway so far.

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #55 on: November 16, 2020, 02:29:07 PM »
POIS Doctors list has just been updated with a 13th Doctor, Dr Rachel Rubin ( thanks to Muon)

See the complete list at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
« Last Edit: November 16, 2020, 02:33:43 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #56 on: November 16, 2020, 02:43:27 PM »
POIS Doctors list has just been updated with a 13th Doctor, Dr Rachel Rubin ( thanks to Muon)

See the complete list at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338

Thanks for the forum management Quantum.
« Last Edit: November 16, 2020, 02:47:26 PM by Muon »

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #57 on: November 18, 2020, 05:14:23 AM »
3 more doctors shared their contact info which is great. All from Indonesia and authors of this paper: Post-orgasmic Illness Syndrome: A Closer Look

"Thank you for your information about this community. And yes, you can add me and my colleague to the list :) Hope this community can always help many people to have a better understanding about POIS.

Regards,
William
"

Doctor's name
  • William, MD
Contact information
  • Department of Medical Biology, Faculty of Medicine and Health Sciences Atma Jaya Catholic University of Indonesia, Jakarta, Indonesia
  • Andrology Specialist Program, Faculty of Medicine Airlangga University / Dr. Soetomo General Hospital, Surabaya, Indonesia
E-mail
  • william@atmajaya.ac.id
----------------------------------------------------------------------------------------------------------

Doctor's name
  • Cennikon Pakpahan, MD
Contact information
  • Department of Medical Biology, Faculty of Medicine Airlangga University, Surabaya, Indonesia
  • Andrology Specialist Program, Faculty of Medicine Airlangga University / Dr. Soetomo General Hospital, Surabaya, Indonesia
  • Ferina Hospital - Center for Reproductive Medicine, Surabaya, Indonesia
E-mail
  • cennikon.pakpahan@fk.unair.ac.id
-----------------------------------------------------------------------------------------------------------------------

Doctor's name
  • Raditya Ibrahim, MD
Contact information
  • Andrology Specialist Program, Faculty of Medicine Airlangga University / Dr. Soetomo General Hospital, Surabaya, Indonesia
  • Raditya Medical Center, Depok, Indonesia
E-mail
  • ibrahim0606@live.com
« Last Edit: November 18, 2020, 05:53:12 AM by Muon »

zzzzzz

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #58 on: November 28, 2020, 08:35:47 AM »
13 -Doctor's name:  Jia Yin, MD, Allergy Doctor/Professor
President of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact Information: Peking Union Medical College Hospital, Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website:http://ims.pumch.cn/doctor/detail/4573.html
POIS article(s) published: Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen  https://sci-hub.se/10.1111/jsm.12813
Other Information: She reported the first POIS patient in China and has built up a team to research POIS

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #59 on: November 28, 2020, 08:39:54 AM »
Thanks for sharing this zzzzzz.